Day Seventeen

James is munching on a mum mum (mango cardboard flavor) and enjoying not being in writhing pain for a bit. The fact that the mum mum, which he can feed himself, heaven forbid you help him feed himself. In many ways, James is fiercely independent. Today he felt more himself and we had to remind ourselves that when James feels well, he really just is not a cuddly baby. He likes to be on his own, to explore and to do what he wants to do. He gets annoyed when you hold him in one spot for too long- he wants to choose his own course. Sit his own way, lay sideways on his stomach, and feed himself without your help. It's his natural state. Laying on your chest is something he does only when he's sick, when he needs you. When he's well he doesn't.

The fact that we had time to remember this today is a testament to the fact that James feels much better than today than yesterday. The night did not go well. James threw up everything, his zofran, his lortab, his prevacid, everything. He went back on fluids. We switched to IV zofran and he kept throwing up, even with the max dose. He clutched his head constantly in pain. The go home plan, which is dependent on his oral meds, went right out the window. On one hand however, I'm glad we were here and not home when James spiraled downwards.

After James threw up on the way back from his flow study- all over me and the paramedic transport, a meeting with the oncologist was in order. After the long night, Kara and I were extremely harried and more than a little frustrated. One thing I like about this oncologist is that he has a very reassuring, consistent presence. His mood seems very stable, which when you're up and down all the moving from crisis to crisis, is a welcome trait. He also has a tendency to dress in what I would call Country Club chic. If our neurosurgeon cultivates the sports car and colorful, expensive suits look- the best analogy I can think of is the "Shark Tank" panelists- the Oncologist with his polo, dockers, and glasses, feels more like someone you'd meet at a country club who drives off in a Lexus. For whatever reason, I find country club chic reassuring. Given that he's probably spent three or four hours reassuring over the last few days, the consistency and the patience is greatly appreciated.

The talk with the oncologist resolved some important issues. He reassured us that though James' recovery from the surgery was on the wrong side of the median, he was still well within the acceptable range and none of these complications would interfere with beginning chemo. We changed James' medications and introduced IV pain meds to control his pain, though the initial dose snowed him completely, we eventually succeeded in getting a dose that kept him relatively content and still somewhat alert. We also reintroduced the steroid- we'd prefer to be off the steroid, as it can interfere with chemo, but it helped James in the past. The combination of these medication changes certainly helped stabilize James. he's not writhing in pain anymore, his vomiting appears under control, and as a result everyone is much less stressed. The other bit of good news is that his flow study which was not going well yesterday resolved itself overnight, all clear. We're an audiology test and an admission away from starting chemo, and if we can transition successfully to oral meds, we'll be home before that begins. It's possible we may not be however, and we're trying to be comfortable with either outcome. In the grand scheme of things, days at home are unimportant compared to beginning James' treatment.

The other good news today was that James' most recent CT scan came up clear yet again, confirming that he's not suffering any increased pressure in his ventricles and developing hydrocephalus again. James has had four CT scans now. Back in April, we were on the fence about even doing one because of unlikely, but potential, complications. They're routine now- we know exactly where the room is. Any potential complications are immaterial given James' condition. Once again, priorities have shifted. For memory's sake, here's a picture of Jamesie getting a CT. We call him "baby burrito" because of the way they wrap him up. He hates it. As I said, he likes to wiggle.

In the scheme of procedures James goes through, it's small one. It's no MRI with general anesthesia. Not even a rapid MRI. It still seems bizarre to me that these are things I actually think.

In any case, James appears much improved today, and we're glad. We're still worried that when we try to transition to oral meds the cycle will start right back up again, but we're hoping that this time, with a little more healing, James will be himself for longer. We miss our wiggle worm.

As always, thank you for thinking of James and praying for him. I continue to be overwhelmed by the number of people, from strangers to people I haven't spoken to in years, who have been in contact with us about James.

Day Sixteen

James is perfecting his crawfish in this photo. He's dressed for the first and last time of the day and watching the Very Hungry Catepillar on his DVD player. We're hoping to upgrade to a home theater system in the hospital soon, but until then James will have to make do with just his potable DVD player and his iPad. It's a hard life.

As I write that, I'm struck by the fact that no matter what I buy James, he'll be using it in the hospital. No matter how much money I spend- nothing will change. James will remain sick. He will not improve as a function of the money I spend, and I couldn't come close to even paying his bills without insurance even if I wanted to. I'm pretty sure we burned through my annual salary in the first week here. This just highlights the how powerless I often feel here. James, Kara and I are all too often acted on, we exist in a constant state of passive voice. It's not that we don't advocate for James- we do- but so many of the big things, his tumor, his complications, his health, are fundamentally beyond our control. We can respond to them, but we cannot control them. On some days, like today, we barely even manage to contain them.

James did not have a good day. He's clutching his head- clearly in pain even if he can't express it. He's vomitting still. His spinal flow study didn't go as quick as planned, so we have to wait a full 24 hours until tomorrow morning to check it. Please pray that the study was a success and the medicine traveled well through James' fluid. The alternative would require us figuring out why it didn't, and undoubtedly further delaying his treatment. We do not want to delay his treatment any further.

Even radiology this morning started out on a rough note. I spent the night at home, and arrivedf at the hospital after James was taken down for his study. I went to the radiology front desk as instructed. The receptionist confused James name, confused the year I gave her for his birth date, and paused two times to take phone calls while talking to me. Not how you want to start your day. For the final nail in the coffin, she had no idea what James' study was and equated nuclear medicine with X-Rays. We're way past X-Rays. The radiology staff was very nice, even if James did have to go under anesthesia yet again. The doctor who performed the procedure was the mother of two six month old twin boys. She loved James' hair. Sometimes, I wish people wouldn't- it just reminds me he's losing it soon.

The study meant James, Kara and I had to go back and forth to radiology several times today for pictures to see how the fluid was progressing. This meant just as James became comfortable, we were headed back up with transport. James' mood worsened through the day. He's coming off steroids, which put him in a bad mood, in pain, and moving all the time. Not a great recipe. In addition, because we thought we might go home today if the study went well, James' meds were all switched to oral. James hates oral meds. He will literally do hold them in his mouth and spit them back at you for minutes on end. This is fine for most of them, but when he spits out the zofran, we have a problem. Because then he throws up. And that begins the cycle. The cycle began around 4 today, right after we received the deflating news that we would be here another night. James was a little overdue for zofran, and he threw up. We waited and tried again later. He threw up again. If not actively medicated, he throws up. No one seems to know why. Theories are floated. Kara and I are proponents of the subdural edema theory- the fluid build up around his incision site for his big surgery. The problem is, there's no shortage of potential causes. There are lots of things doctors think could cause James' nausea right now. There is nothing they think is causing James' nausea right now. We're trying to manage his pain better now. We hope it helps. So far it mostly just seems to be speculation on everyone's part. James can't say anything, so we don't know what he thinks. The situation is frustrating, and it's difficult to see James suffer, especially when we don't know why. Pain for chemo or treatment is one thing- it has a purpose. This is harder. It doesn't have a purpose and we don't know what it is. He's back on IV zofran and fluids now, and his weight is below what it was when we first admitted back on June 22 after he'd spent eight days vomiting. The doctors are trying, and all of the oncology doctors hear us out, we just can't seem to get to resolution.

We're hoping the following things happen tomorrow. 1) James' spinal flow study is a success. 2) We figure out and treat his nausea so that he can be strong to start chemo. 2 is definitely our number 1 priority- we'll figure out 1 if we have to get there. We just feel like we had a week- 1 week- to spend at home before everything, and now we've spent that week in the hospital. And no one can explain the problem that brought us back in the first place.

That's not to say random, unexpected things don't still happen that make us laugh. One side effect of your child vomiting every hour or two is that you go through weeks worth of clothes in hours. This translates into laundry. There is a laundry machine on the floor that we've monopolized all day. But it's not without its hazards, as Kara discovered today when we washed a load including a pillow. When we returned, the laundry machine had moved from the wall to the middle of the room, the machine walked forward by the unbalanced load. Kara was so proud.

That's a thumb up of approval. The laundry machine survived. In a weird way, it was one of the best things that happened all day. There are so many times in any given day when we feel like we're hitting a wall that these things are always funny.

Let's hope for a better day tomorrow. As always, thank you for your prayers.

Day Fifteen

Allow this photo to serve as a preview of our photo shoot today. Our photographer, Katie Norris, her assistant Brook and videographer David took some better shots. In particular, I strongly suspect that none of their photos include chairs, trash cans, rocking chairs, or needle disposal boxes in the frame. My taste level leaves something to be desired. As you can see, our outfits coordinated nicely. Kara looks fantastic in her white dress, and James is dashing in his navy shorts and white shirt. Offscreen, I'm rocking linen white shorts and a white shirt with cyan, indigo, and cobalt stripes. So basically blue stripes. Thank you to our friends from the "Quad" for coordinating the outfits.

The best word to describe today was hectic, as Kara called it more than once. After spending the night at home, Kara woke up early and came back to see James off to the procedure we were told all day yesterday would take place this morning. 8:00 comes and nothing happens. We bug the nurse. 9:00 comes and still no word. Finally, at 9:30 we're told that an error was made in James' orders and in fact no procedure is scheduled today- what we thought was today is actually tomorrow morning. This upset us, because James could not eat all last night due to that order. Frustrated, we fed James. He promptly threw up. The day never really recovered from starting out on this poor note. James is on steroids, so not only is he a hungry baby, he's a hormonal hungry baby. Pinching, screaming, fits, are all amplified and compounded by that James simply does not want to be in the hospital anymore. For whatever reason, he never really recovered the better mood he was in yesterday. I don't blame him. I doubt I'd be pleased if I was hungry all night and then threw up breakfast to start the day.

Rounds began at 6:30 and throughout the day we cycled through the three disciplines we've now involved in James' care. Neurosurgery came early and alone. They do not know why James is throwing up. Oncology came often and in ones, twos, and fours. They do not know why James is throwing up- but strongly suspect it has something to do with his head. Neurology came twice, a warm up visit and a full on assault by the attending and his groupies- one fellow, two residents, and two med students. A microcosm of the physician food chain. They do not know why James is throwing up but are pretty sure it's not seizures. They'd like to do a day long EEG to make sure though, but they're indifferent about actually doing it. I'm inclined to agree with oncology's opinion. Unfortunately, there's enough options that it's tough to nail just one down, and none of the twenty or so doctors that have seen James have a great answer. James' swelling from surgery will not subside for several weeks, so we're unlikely to discover what the cause is before we add another potential cause, chemo.

Although nothing happened today in terms of tests or procedures, the day flew by with doctors visits and minor complications. James' port got off center- his skin puffed up with fluid and we had to de-access and re-access it. Decisions about medication came and went with a number of different prescriptions proposed and rejected before we settled on oral zofran.

Two big oncology events occurred today. The first was a visit from one of the oncology discharge nurses, who took an hour to walk us through the grueling process of what chemo looks like. The short version is that chemo is miserable. It will change James in ways that I am frightened to think of. It will interrupt the happy life of my son and replace it with something altogether awful. Yet while the nurse ran through the litany of sores, hair loss, nutrition loss, transfusions, infusions, ANC tests and 101.5 fevers, it never occurred to me to ask for an alternative. In many ways, the decision is simple because there is no decision. James must be treated. There is no acceptable alternative. Kara and I read about a couple whose doctors gave them only a 30% survival chance. They opted not to pursue treatment. We both simply couldn't understand the decision. I would pursue any chance, through any means, to ensure James' health. What he undergoes now will not be pleasant. There is no sense in pretending otherwise. But we know that for James, there is no other choice. We have to choose hope for James, and for ourselves. The nurse comforted us with a thought that's occurred to me many times over the last two weeks- James will never remember this. He will simply be better, and marvel at the story we tell him to explain his scar.

The other oncology visit of importance was to obtain consent for James' treatment. We must agree to treat him, to allow everything to happen to him. The oncologist appeared prepared for a much more detailed discussion- as so many of our questions were answered during previous visits, we actually didn't have very many this time around. Only the formality of signing off remained. Still, we were pleased that the oncologist appeared willing to talk. Oncologists usually sit if you give them a chance- which in my mind is a commitment to an actual conversation. We appreciate that. The doctor told a story of a couple- both real estate attorneys- who returned the consent form marked up, with side effects they didn't want crossed out with initials. I laughed at that. As if you could contract for side effects. If only. Why bother to initial out only the side effects? Why not just change the diagnosis while you're at it? Despite its formality, the act of consenting still served to reinforce the reality of the situation. I am agreeing to this. This is actually happening. My son has a brain tumor and needs a year of chemo. Small details like consent always bring home these facts in a way that thinking of them never does. The other small, but all important, detail revealed during the consent visit was the date James' chemo will begin: Thursday. July 14, 2011. Please pray for us and for James on this day as we begin our journey in treatment. This day is a compromise between the 11th and the 18th, so we're pleased to be starting as early as possible.

The consent visit actually interrupted our photography session. Fortunately, the photographers were gracious enough to agree to come to the hospital to take some photos for us. We're hoping we can do another, less sterile shoot once we get home (if we get home) to take advantage of James' many props and hopefully improved disposition. Unfortunately this first one had to be at the hospital as we never made it home this week. James threw up 30 minutes before it began, and we barely finished cleaning him up and getting dressed in the time between the oncology nurses' hour long visit and the start of the shoot. The frustrating thing about hospitals is the complete lack of schedule. People always ask us "what time" they should visit. The truth is we have no idea, because we have no control. At any time, something may happen. A doctor may come in. James might throw up. There is no good time. There is only time, great swathes of it where nothing seems to happen and then everything happens all at once. The day happens to you when you least expect it.

Although we hopefully did get some good shots, James' mood never improved to where we had hoped it would be and he eventually declared himself done. No matter the result, we enjoyed getting him dressed and outside. It's amazing the difference putting him in clothes again makes. He looks so much more like a baby- so much healthier wearing more than a diaper and leads.

Nevertheless, James' fussiness was hard for Kara and I because James used to love the camera, his bright beautiful smile never cared about the time of day. Now, when he's sick, we have to work hard for that smile. He's still there- but on rough days, like today, he's harder to rouse. Even though James had a rough day, we are very grateful and blessed that Katie and her friends took time out of their days and schedules to come work with us. Hospitals can be out of the way in the best of circumstances, and we deeply appreciate them working with us.

While I'm on the subject of thanks, I'd like to thank anyone who has brought us food, gift cards, or anything else over the last few weeks. You have no idea how much easier this has made our lives. Only James gets food in the hospital. Kara can get occasional room service as a breast feeding Mom, but the less said about that food the better. The dinners and lunches you all have provided have spared us many trips outside of the hospital and treated us to much better food that we'd otherwise be suffering through. Similarly, we had no idea you could spend that much in Starbucks gift cards. Thank you for enabling our addiction. And as always, thank you for your prayers. They are even more essential.